Saturday, March 30, 2013

It's spring. My daughter got her bicycle out of the garage. It's a green Manhattan Smoothie. Steve put air in the tires and Miss Evelyn took off down the street. Inspired, Steve got his bicycle out of the garage. It's a Ryan Vanguard recumbent.

I...

I looked at my bicycle buried in the corner of the garage. I thought about digging it out. I thought about how good it would feel to hop on my bike and go for a ride. Feel the wind in my hair. And then I remembered I traded my bike for Myasthenia gravis. A favorite part of my life remains buried in the garage.

Meanwhile, my family gets to ride their bicycles and I get to watch. And wish. And remember. And cry inside where no one sees. I got in the car and drove away. I drove past a pack of people riding bicycles single file along the side of the road. Tears filled my eyes. I turned the corner and went down another road.

On the radio, the Song Bicycle Race by Queen came on. "I want to ride my bicycle..."

I turned it off. The lyrics remained in my mind.

I want
to ride
my
Bicycle...

What I want does not matter. Myasthenia gravis has forced me to take what I do not want and give up what I do want. My bike was stolen by a thief who cannot be prosecuted and cannot be forced to pay restitution. I cannot get my bike back. No matter how much I want it back. And I do want it back.

I want
to ride
my
bicycle.

I still have a bicycle. I keep it in the garage. It's buried behind an old wagon, garden tools and empty boxes. I can see my bike, but I can't get to it, just like I can see myself riding it, but can't do it. I can't get the idea through my head that I will never be able to ride it again. I keep my bike. It's a dream I have. One day. Some day. I'll get on my bike and ride for miles and miles with the wind in my hair. One day. Some day.

Then reality slams into me harder than an invisible car. I fall head first out of my dream into a reality I don't want and never chose.

I want
to ride
my
Bicycle.

But, I'm going to push my walker down the street instead.

"Hey, Grandma, aren't you a little young for that thing?" I'll hear from someone speeding past me on their bicycle.

Maybe I'll just stay home.

I want
to ride
my
bicycle.

I got an invitation to attend Tour de Cure. It's a fundraiser for American Diabetes Association.

"Tour de Cure is more than just a cycling
event. It's a life-changing event. A day full of fun and excitement
where riders of all levels join forces in the fight to Stop Diabetes® and raise critical funds for diabetes research, education and advocacy in support of the American Diabetes Association."

I want
to ride
my
bicycle

Every spring it's the same. Every spring I am confronted with the loneliness of a body that doesn't move. I am confronted by bicycles everywhere I look. And now I get invited to a bicycle event that I can't participate in.

Well, even though you can't ride in Tour de Cure, you can still help out. You can pass out drinks. You can give out shirts. You can...

Do everything except what you want? Is that supposed to make me feel better? It doesn't. Today I am sad. Today I am frustrated. Today I am aware of loss. Today I am bitter. Today I feel like being left alone.

Wednesday, March 27, 2013

There is something worse than cactus pajamas. It's running into people like Kelly talked about in her blog post. The only good thing about having MG is no one has ever heard of it. There are few self appointed experts on myasthenia gravis. That's not the case with diabetes. Oh no. Everyone has heard of diabetes. Excuse me, diabeetus. Misinformation experts are everywhere and they are worse than cactus pajamas.

I was in a restaurant recently. I ordered my lunch and checked my blood glucose. Then I got XPU out of my pocket and got ready to bolus. As I was pushing buttons, a lady leaned over and said, "Oh is that an insulin pump?"

Now, that conversation opener is going to go one of two ways. It's either going to be, "Wow, my nephew has one of those. He loves it."

Or the conversation is going to go badly. Really badly.

Giving the lady the benefit of the doubt, I told her it was an insulin pump. That's when I heard it. The faint strains of Pop-Goes-The-Weasel. I accidentally turned the crank on an evil jack-in-the-box.

She said, "My son-in-law had one of those things. I don't want to scare you but he
was on a skiing trip, and something went wrong with his pump. It pumped
an entire thing full of insulin into him in the middle of the night. My daughter
had to rush him to the hospital. I'm sure your pump won't break like
that, but you be careful with that thing."

(http://www.bizarreprops.com/images/psycho%20clown.jpg)

All I wanted was a pleasant lunch. Instead I ran into another "helpful" stranger who turned into an evil jack-in-the box just to torment me. I hate when this happens. The same thing happened when my daughter was a baby.

(if you are pregnant or have a small baby, please skip this next section. I'm adding space so you can do this. Scroll down until you see the cute puppies. Once you've seen the puppies it's safe to come back. Please look away and scroll.)

When my daughter was a baby I found my two-month-old blue and unresponsive in her crib. I shook her and she took a breath. We rushed her to the doctor. Evelyn had apnea and bradycardia. For some weird reason young Evelyn forgot to breathe and her heart slowed down in her sleep. She was an extremely high risk for sudden infant death syndrome. So, we had an apnea/bradycardia monitor that sounded a loud noise when she quit breathing. Evelyn had alarms several times a day. It became strangely normal to hear the alarm, find a blue baby, shake her awake, and then go back to sleep.

I had to take an apnea monitor with me everywhere. I was in the grocery store with my new baby and her monitor. A stranger walked over and said, "Is that an apnea monitor?"

"Yes."

"I'd never use one of those. My friend's baby died while she was on one of those things."

I was stunned stupid. Twenty-two years later I am still stunned stupid. What an evil thing to tell me! It's been 22 years and I still refuse to even tell anyone with a new baby about what happened when Miss Evelyn was little. She's fine now. Seriously. Miss Evelyn out grew her problems when she was nine-months-old. Even though everything turned out all right, there is no way I would ever say anything so cruel to a new mom. I won't use my own story as a weapon to harm someone. Ever. That's why I gave the warning before typing this.

OK, I am adding puppy pictures now so anyone who really shouldn't have read that section can come back.

Puppies to lighten the mood a bit... There's Honey as a wee pup and April at Honey's birthday party. Aw...

Now that we're all back together again... Angry switch flicked back on...

People who tell me horror stories are worse than cactus pajamas. I don't need the mental image of my pump going crazy and pumping a new cartridge full of insulin into my body. Could it happen? I suppose it could happen. My pump is mechanical and mechanical devices can go crazy. Is it likely? No. A meteor could also crash into my car while I am driving. I'm not going to be afraid of XPU. I don't want to live my life that way.

Why do people tell horror stories? Are they trying to be helpful? Helpful would be telling me how neat insulin pumps are. People who tell horror stories deserve cactus pajamas. I wish I could give them a pair and say, "Snuggle up with these PJ's and stick it!

Wednesday, March 20, 2013

There is nothing common about having a cold with myasthenia gravis and diabetes. I've been dealing with a cold for just under a week. Colds make everyone feel weak. Add MG into the mix and I have been limp as a rag doll.

I find a stuffy nose intolerable. It makes me short of breath and I feel just frantic when I can't breathe through my nose. Of course, being short of breath freaks out my breathing muscles, which makes them even weaker. The spiral effect has put me in the hospital before. Infection can trigger a myasthenic crisis. I haven't had a crisis since 2005 and I would like to keep it that way. Since there is no such thing as a common cold for me, I act quickly when I get sick.

Before I was diagnosed with diabetes I would take over the counter decongestants to keep my nose halfway functional. Anything I can do to stop MG from spiraling out of control is a good thing. Except... except now I have diabetes. All the cold medicines warn not to take them if you have diabetes. Once again I found myself unable to balance diabetes care with MG care. Or, more accurately, I found myself at the crossroads of Screwed Avenue and F***ed Boulevard.

If I take cold medicine my blood sugar will go crazy.
If I don't take cold medicine MG will go crazy.

Which wins?

MG wins.

Breathing trumps any other concern. If my blood sugar spikes, I can add a temp basal and manage it. But, if I stop breathing I proceed directly to dead. Sometimes at the corner of Screwed Avenue and F***ed Boulevard there are no good choices. Fortunately, Afrin had little noticeable impact on my blood sugar. It did the job and helped my breathing even out. Thank goodness for that. My trick for preventing nasal spray addiction is gradually diluting it with saline so I avoid rebound congestion. I only use Afrin for three days, too. It's not a perfect solution but it works for me.

I'm still coughing. Still weak. But, I'm doing a little better every day and that *Achoo!* matters.

Wednesday, March 13, 2013

My blood sugar is rising at the speed of sound. I didn't eat something strange. No, I didn't forget to bolus. I was getting ready to take my daughter to work, so I got my sneakers from the boot tray. I was thinking about making pot roast for dinner as I untied my sneaker. I put my right foot in the sneaker and felt something odd by my toes. It was soft and squishy, like a balled up sock.

Or a live mouse!

I yanked my foot out of my sneaker and a mouse bolted out of my shoe and raced down the hall. I let out a yelp that if you listen closely you can probably still hear. I flung my shoe. It's still on the floor where I left it. Too freaked out to drive, Steve took Evelyn to work.

I'm still freaked out. The mouse is somewhere in the house. My blood sugar numbers are on a roller coaster ride. A reminder once again that high blood sugar is not always caused by food. Sometimes it's stress. OK, I am calming down. I need to go to the store to buy a pot roast and a new mouse trap.

Tuesday, March 12, 2013

Tonight I said it. "I don't wanna be diabetic anymore." I was putting in a new pump set. I chose a site, cleaned it off, lined up my Inset 30, pressed the circles, and SNAP. In the needle went. Something went wrong. Pain ignited across the entire left side of my belly. I yanked out the set. Tears spilled down my face. As I mopped up the blood I knew two things.

1.) I still had to put in a new pump set.
2.) I didn't want to try again.

That hurt. It really hurt. It still hurts as I am sitting here typing. Normally my set changes are routine and relatively painless. Not this time. My side is still burning.

While my pump finished rewinding I cleaned off a new spot. My hands trembled as I lined up my Inset 30 again. The last thing I wanted to do was stick that long needle in my skin again. I wanted the diabetes fairy to come down and fix it. But, there was only me. I always want to find my courage first, and then do something difficult. Courage doesn't work like that for me. Courage comes while my heart is beating fast and my hands are shaking. It comes while I'm blinking tears. It comes while I am still afraid, but doing the right thing nonetheless.

Just like before, I pressed the little circles and the Inset 30 went SNAP! Only this time it went in smoothly. I got my new set in place just like normal. XPU is filled with insulin and everything is working as it should. I always change my set on Monday because in about an hour I'll take my weekly MG meds. Every Monday night I take a chemotherapy drug to slow down my immune system so MG doesn't get too aggressive. Every Tuesday I feel poisoned. Exhausted, dizzy, nauseated, weak, feverish and just plain sick. I've done this over 300 times. You would think it wouldn't scare me any more. I know what to expect. I know what is going to happen. Yes, I do know. That is why I am always afraid to take these pills.

I don't find my courage while I count the pills out and put them in a paper cup. I don't find my courage while I get the water ready. I wish I could save courage up like money in a bank, but it never works that way. It's not there before I need it. I find courage in taking the right actions even when I am afraid.

The pain in my side is fading. Just in time to take my pills. Sometimes the things I do to survive hurt. Small hurts like finger sticks. Big hurts like surgeries. I am tired of hurting. It takes courage to admit that. It also takes courage to keep on going anyway. Tonight I am reminded that pain is as much a part of life as joy. I'm not a brave person. I'm a coward without options. But, I can still see the bigger picture. Pain is a bridge I cross that allows me to have a life that is worth living. Without insulin to keep my blood glucose in check, without chemotherapy keeping MG quiet, I couldn't survive.

When I need to cross those painful bridges, courage meets me in the middle. She reminds me of the other times when I was afraid, and did the right things anyway. She reminds me I'm capable of doing what I have to do. Past Marie did not fight so hard to survive just so Current Marie could wimp out and quit. Courage reminds me to honor my past and take heart. She also reminds me to dream about my future. Now there is pain, but it is not endless. It connects me to a place where there is laughter, and friendship, hope, and peace.

Sunday, March 3, 2013

I'm in that space between elated and exhausted. About 10 minutes ago I finished draft one of my new book The Life Etudes: Studies In Thriving At The University Of Catastrophe. It is the sequel to Life Music: Lessons Learned At The University Of Catastrophe. You can read a sample from Life Musichere. Life Music was about living well with MG and getting through 23 back to back cycles of chemotherapy.

The Life Etudes continues on the same theme, only of course I've added diabetes to my life story. Adding diabetes was (and is) rough. The Life Etudes is in five parts. Part 1 is about changing my perspective so I can adapt to diabetes. Part 2 is about finding meaning in my life. Part 3 is about endurance. Part 4 is about transcendence. Part 5 is about leaving a legacy.

Draft one is finished. I don't have to stare at a blank screen hoping my muse is in the mood to play with me. My muse is a one inch high fairy. She looks exactly like me, only Muse is about half as nice. Muse is capricious little thing. When I am in the mood to write, she disappears. I'm left starting at a screen for five hours with no words in my head. Ten minutes after I fall asleep, then she wakes me up and chatters her little fairy head off. I think this amuses her. It drives me batty.

I am so glad to have finished draft one. I'll keep you posted on when it will be available for sale. For now, celebrate with me. I made it past the crazy phase. Whew!

Marie Smith

Marie Smith is a writer, cellist and talented public speaker. She is the author of Life Music: Lessons Learned At The University of Catastrophe. And her new book Life Etudes: Studies in Thriving At The University Of Catastrophe

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.